The Duchenne Dash 2016

This year’s annual Duchenne Dash has raised an incredible £400,000.

The Dash is Duchenne UK’s 300km bike ride from London to Paris, which takes place over 24 gruelling hours. This latest is the fourth event, in which around 100 riders took part, including Jon Snow and Dermot Murnaghan.

This year the Dash was joined by the Dash Max, the brainchild of Ali Robertson, head of our Patient Advisory Board, and father to Felix, who was diagnosed with DMD in 2015. He and his core team of 9 started the ride a week early in John O’Groats and rode all the way down the country to join the rest of the Dash at the London start, before continuing to Paris. Ali’s team raised over £130,000 of the total: an incredible achievement.

Please see our Facebook and Twitter pages for pictures and comments on the event. And watch our video below.

We at Duchenne UK would like to thank all the riders of the Dash, our volunteers, support team and also our incredibly generous sponsors

Summit Therapeutics plc have announced positive 24-week interim data from PhaseOut DMD, their Phase 2 clinical trial of the utrophin modulator ezutromid. The data showed a significant reduction in muscle damage and an increase in utrophin in muscle biopsies.

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Summit Therapeutics plc have announced positive 24-week interim data from PhaseOut DMD, their Phase 2 clinical trial of the utrophin modulator ezutromid. The data showed a significant reduction in muscle damage and an increase in utrophin in muscle biopsies.

Yesterday, the new Care Considerations for Duchenne were published. We strongly encourage all parents, caregivers and patients to read these updates to the standards of care to ensure that everyone living with Duchenne has access to the best possible care

We’re pleased to share the latest coverage of Hercules. The launch of the project, with our seven industry partners, has received coverage in 10 publications. HERCULES is collaboration between Duchenne UK, and pharmaceutical companies to increase the chances of patients with DMD of accessing innovative treatments.

Duchenne UK is delighted to have been chosen by Marshall Wace as their charity of the year and to be awarded a donation of $100,000. The donation from Marshall Wace will fund 10 boys with Duchenne on our Tamoxifen Trial.

The DMD-Hub was created by Duchenne UK and leading neuromuscular clinicians. The DMD-Hub is addressing the lack of capacity in the UK for clinical trials in DMD. During the first year of operation the DMD Hub has successfully achieved, even surpassed, the immediate priorities identified through the Newcastle Plan.

We would like to congratulate the Joining Jack team for their recent victory! Joining Jack took a team to the Dubai 7's international rugby competition, and they came back champions! Alex Johnson, founder of Joining Jack and Jacks Mum, tells us more about Joining Jack's victory at the Dubai 7s.

It has been a busy year at Duchenne UK. Our mission is to fund and accelerate treatments and find a cure for Duchenne muscular dystrophy. We look at where we can add value to the drug development pathway, and how we can help to accelerate research that will benefit the whole community.

Today, December 14th, marks the publication of Janet Hoskin's book: 'A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents'. We are offering free copies to families affected by DMD, please contact us to request a copy.

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Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

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